newbie

[Guest guest]

Welcome B,

You have joined one of the best support groups on the net. Our moderators

are knowledgeable, warm, wonderful people. We have all been affected by

this disease in so many different ways. That if you have any questions, one

of us is usually able to answer them or if not, they will find the answer for

thru their endless supply of links. You will never learn more about your

disease process than right here. No one here will ever tell you that it is

all in your head or that you are some kind of freak. Because if that applies

to one of us, it applies to all of us !!!!! LOL. We are all in different

stages of this charming disease also......some not been dx'd, some newly

dx'd, some dx'd so long ago they could write their own books on the disease.

Just remember that no two cases are a like & that is what keeps us coming

back for more.

One the upside, we share jokes, recipes and inspirational messages that help

us get thru each and every day. Feel free to share with us anything from a

to z, family to physicians, whining is permitted & expected (we serve cheese

with the whine every evening at 7:00 pm). You will find that this site has

become your new safe place & hopefully you will turn to us often if for no

other reason that to just say Hi......

Welcome home, feel free to kick off your shoes & get something cool to drink,

someone is always here 24/7. We look forward to getting to know you better.

Gentle, tender, welcoming angel hugs,

Debs in FL

[Guest guest]

Welcome to our group, !

I'm sorry about your lupus diagnosis, but I can understand that it was a big

relief to finally have an idea of what you are up against. I'm still

undiagnosed after four years and believe that lupus or a lupus overlap may

be a possibility for me.

Have you read " The Lupus Book " by Dr. Wallace yet? I highly recommend

it for both you and your husband. It is a thorough and sometimes fairly

technical treatment of the many aspects of lupus, yet highly readable and

designed for patients and their families. I have read just about all of the

lupus books available for laypersons, and it is without a doubt the best. If

you do search for it, be sure to get the second edition - it's $25 dollars

well spent!

Are you under the care of a rheumatologist? If you aren't, I urge you to go

see one. A rheumatologist can best assess the degree to which your body has

been affected by the disease and what to do about it. It is very important

to determine if your organs, particularly your kidneys, are OK. The

physician can tell you what medications will be most effective in keeping

your disease under control and your symptoms to a minimum. It's unwise for

me to advise what medications you should try - OTC or prescription - since I

am not a doctor and I do not know the nature and extent of your disease.

Whoever your physician is, ideally he or she should have experience with

lupus patients.

Here is a little bit on nausea in lupus from " The Lupus Book " :

" At various times, many of my patients complain of nausea, vomiting,

diarrhea, or constipation. The most common sources of theses complaints are

nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, and

chemotherapy. The rest of the bowel complaints listed here are what doctors

label " functional. " In other words, they represent a disorder that carries

several names including functional bowel disease, spastic colitis, or

irritable bowel syndrome - all of which are related to abnormal intestinal

motility or are due to malfunctioning of the autonomic nervous system. This

condition correlates with the presence of fibromyalgia, which is not a part

of SLE. It is, however, seen in a large number of lupus patients.

Occasionally, the symptoms of nausea, vomiting, diarrhea, or constipation

reported by SLE patients are due to lupus or a concurrent inflammatory bowel

disease such as ulcerative colitis. "

I'm sorry your husband is having trouble grasping or admitting how you are

being affected by lupus, but reading the book may help. Also, if he can

accompany you to an appointment where the doctor can explain your disease

and how it may affect both of you, it could help, too. This is a very common

problem that most people here in our group have dealt with in one form or

another.

Profound fatigue is another problem common to many rheumatic diseases,

including lupus. Your fatigue may improve once you are on the appropriate

treatment. For now though, just let the house go and concentrate on you and

your health.

Here are some links to some good lupus sites that may be of help:

http://www.lupus.org.uk/FAQ.html

http://www.lupus.org/lupus/index.html

http://www.uklupus.co.uk/

http://members.aol.com/NikkisCats/Lupus.html

[ ] Newbie

> Good evening. I was diagnosed with Lupus about 6 weeks ago and have

> to admit that it was a relief to finally have a name for my

> symptoms. I had been telling the doctors for over 3 years that I

> ached almost all the time, had strange fevers out of the blue, was so

> tired some days that I couldn't lift my head up off the pillow.

> Finally the doctor scheduled an ANA test and gave me the news.

> Fortunately I retired 2 years ago since I would not be able to keep a

> job now since my symptoms have become so severe. I took prednisone

> to overcome a rash I had on my body for a couple of weeks and it

> worked but I'm on no medication now. I take Ibuprofen when the pain

> gets too bad. Are there any other over the counter meds I can take?

> Also, I have bouts of severe nausea. Do others get this also or is

> that not one of the symptoms of Lupus?

>

> I don't think my husband understands much about the disease and

> doesn't seem to want to learn. He's indulgent to me when I say I

> can't do something but I know that he must be really tired of hearing

> that I'm aching again. I try to do everything like I used to but

> there are days that I literally can't move and things are beginning

> to go down hill with my house. How do I learn to cope?

>

> B. in MD

[Guest guest]

Welcome !

I'm Rita and I've had RA for 12 years now. I felt like you just being

somewhat relieved to have a name for what was happening to me and some hope

that we might be able to get it under control knowing at least what we were

dealing with.

<< I try to do everything like I used to but

there are days that I literally can't move and things are beginning

to go down hill with my house. How do I learn to cope? >>

Twelve years later , and I could still have written what you just wrote.

My house is becoming a pig sty and while my family knows I have this disease

and can see my deformities, I still get little help. Being a clean person

who likes having a presentable home, I push too much to get it all done and

of course never do anyway! Yesterday I lost it after being put down by my

husband who was out gallivanting all Sunday (still won't say where he was)

and came home to belittle me for the condition of the home and not having any

dinner. I went to the computer and made up an assignment schedule, giving

the members of my home room assignments and dinner schedules. As long as my

rooms stay clean, the rest is on their shoulders! I don't live her alone.

I'm a slow learner though......took me 12 years to get tired and mad enough

to do this! LOL

Good luck setting healthy boundaries, and welcome!

Rita

[Guest guest]

,

Thank you for your advice. I'll check out the book.

I have a daughter with FM and our symptoms are very

similar. Does these diseases run in families? I'm

not under the care of a specialist yet. I go back for

another ANA next month and then, based on the results,

my internist will refer me to one. I realized that

after I sent my message it wasn't appropriate to ask

for medication advice...sorry. Thanks again for

answering some of my questions. It's good to have

sympathetic ears.

--- <Matsumura_Clan@...> wrote:

> Welcome to our group, !

>

> I'm sorry about your lupus diagnosis, but I can

> understand that it was a big

> relief to finally have an idea of what you are up

> against. I'm still

> undiagnosed after four years and believe that lupus

> or a lupus overlap may

> be a possibility for me.

>

> Have you read " The Lupus Book " by Dr. Wallace

> yet? I highly recommend

> it for both you and your husband. It is a thorough

> and sometimes fairly

> technical treatment of the many aspects of lupus,

> yet highly readable and

> designed for patients and their families. I have

> read just about all of the

> lupus books available for laypersons, and it is

> without a doubt the best. If

> you do search for it, be sure to get the second

> edition - it's $25 dollars

> well spent!

>

> Are you under the care of a rheumatologist? If you

> aren't, I urge you to go

> see one. A rheumatologist can best assess the degree

> to which your body has

> been affected by the disease and what to do about

> it. It is very important

> to determine if your organs, particularly your

> kidneys, are OK. The

> physician can tell you what medications will be most

> effective in keeping

> your disease under control and your symptoms to a

> minimum. It's unwise for

> me to advise what medications you should try - OTC

> or prescription - since I

> am not a doctor and I do not know the nature and

> extent of your disease.

> Whoever your physician is, ideally he or she should

> have experience with

> lupus patients.

>

> Here is a little bit on nausea in lupus from " The

> Lupus Book " :

>

> " At various times, many of my patients complain of

> nausea, vomiting,

> diarrhea, or constipation. The most common sources

> of theses complaints are

> nonsteroidal anti-inflammatory drugs (NSAIDs),

> corticosteroids, and

> chemotherapy. The rest of the bowel complaints

> listed here are what doctors

> label " functional. " In other words, they represent a

> disorder that carries

> several names including functional bowel disease,

> spastic colitis, or

> irritable bowel syndrome - all of which are related

> to abnormal intestinal

> motility or are due to malfunctioning of the

> autonomic nervous system. This

> condition correlates with the presence of

> fibromyalgia, which is not a part

> of SLE. It is, however, seen in a large number of

> lupus patients.

> Occasionally, the symptoms of nausea, vomiting,

> diarrhea, or constipation

> reported by SLE patients are due to lupus or a

> concurrent inflammatory bowel

> disease such as ulcerative colitis. "

>

> I'm sorry your husband is having trouble grasping or

> admitting how you are

> being affected by lupus, but reading the book may

> help. Also, if he can

> accompany you to an appointment where the doctor can

> explain your disease

> and how it may affect both of you, it could help,

> too. This is a very common

> problem that most people here in our group have

> dealt with in one form or

> another.

>

> Profound fatigue is another problem common to many

> rheumatic diseases,

> including lupus. Your fatigue may improve once you

> are on the appropriate

> treatment. For now though, just let the house go and

> concentrate on you and

> your health.

>

> Here are some links to some good lupus sites that

> may be of help:

>

> http://www.lupus.org.uk/FAQ.html

> http://www.lupus.org/lupus/index.html

> http://www.uklupus.co.uk/

> http://members.aol.com/NikkisCats/Lupus.html

>

>

>

>

>

> [ ] Newbie

>

>

> > Good evening. I was diagnosed with Lupus about 6

> weeks ago and have

> > to admit that it was a relief to finally have a

> name for my

> > symptoms. I had been telling the doctors for over

> 3 years that I

> > ached almost all the time, had strange fevers out

> of the blue, was so

> > tired some days that I couldn't lift my head up

> off the pillow.

> > Finally the doctor scheduled an ANA test and gave

> me the news.

> > Fortunately I retired 2 years ago since I would

> not be able to keep a

> > job now since my symptoms have become so severe.

> I took prednisone

> > to overcome a rash I had on my body for a couple

> of weeks and it

> > worked but I'm on no medication now. I take

> Ibuprofen when the pain

> > gets too bad. Are there any other over the

> counter meds I can take?

> > Also, I have bouts of severe nausea. Do others

> get this also or is

> > that not one of the symptoms of Lupus?

> >

> > I don't think my husband understands much about

> the disease and

> > doesn't seem to want to learn. He's indulgent to

> me when I say I

> > can't do something but I know that he must be

> really tired of hearing

> > that I'm aching again. I try to do everything

> like I used to but

> > there are days that I literally can't move and

> things are beginning

> > to go down hill with my house. How do I learn to

> cope?

> >

> > B. in MD

>

>

>

__________________________________________________

[Guest guest]

In a message dated 7/24/01 9:16:38 AM Eastern Daylight Time,

Matsumura_Clan@... writes:

<< Good idea, Rita! I hope your family starts to pitch in now. >>

Thanks , I'll keep ya posted......*crossing my fingers! LOL

Rita

[Guest guest]

,

How are you feeling after the ablation? It must be a little bit better as

you are back posting. Keep up the good work. You still have a long road

ahead of you.

I give my kids list, they look at them, laugh & when I am out of the room,

they cross everything off & give them back without having done anything.

Time to try something else !!!!!

Gentle,tender,feel better fast angel hugs,

Debs

[Guest guest]

Good idea, Rita! I hope your family starts to pitch in now. Sorry about the

circumstances that drove you to making the schedule, but at least you took

positive action. I know a family of two parents and four children where all

chores are on a schedule, and it works very well.

Re: [ ] Newbie

> Welcome !

>

> I'm Rita and I've had RA for 12 years now. I felt like you just being

> somewhat relieved to have a name for what was happening to me and some

hope

> that we might be able to get it under control knowing at least what we

were

> dealing with.

>

> << I try to do everything like I used to but

> there are days that I literally can't move and things are beginning

> to go down hill with my house. How do I learn to cope? >>

>

> Twelve years later , and I could still have written what you just

wrote.

> My house is becoming a pig sty and while my family knows I have this

disease

> and can see my deformities, I still get little help. Being a clean person

> who likes having a presentable home, I push too much to get it all done

and

> of course never do anyway! Yesterday I lost it after being put down by my

> husband who was out gallivanting all Sunday (still won't say where he was)

> and came home to belittle me for the condition of the home and not having

any

> dinner. I went to the computer and made up an assignment schedule, giving

> the members of my home room assignments and dinner schedules. As long as

my

> rooms stay clean, the rest is on their shoulders! I don't live her alone.

> I'm a slow learner though......took me 12 years to get tired and mad

enough

> to do this! LOL

>

> Good luck setting healthy boundaries, and welcome!

>

>

> Rita

[Guest guest]

Rita,

Good for you for standing up for yourself in a positive way!! Your

right, you do not live there alone and they should share in the

responsibility of keeping it in order!! I hope your husband gets his

S*%T together and apologizes to you. If not, follow that real age

tip Rainy posted earlier. Love and Forgiveness are God's greatest

weapons against those who harm us:O).

> Welcome !

>

> I'm Rita and I've had RA for 12 years now. I felt like you just

being

> somewhat relieved to have a name for what was happening to me and

some hope

> that we might be able to get it under control knowing at least what

we were

> dealing with.

>

> << I try to do everything like I used to but

> there are days that I literally can't move and things are

beginning

> to go down hill with my house. How do I learn to cope? >>

>

> Twelve years later , and I could still have written what you

just wrote.

> My house is becoming a pig sty and while my family knows I have

this disease

> and can see my deformities, I still get little help. Being a clean

person

> who likes having a presentable home, I push too much to get it all

done and

> of course never do anyway! Yesterday I lost it after being put

down by my

> husband who was out gallivanting all Sunday (still won't say where

he was)

> and came home to belittle me for the condition of the home and not

having any

> dinner. I went to the computer and made up an assignment schedule,

giving

> the members of my home room assignments and dinner schedules. As

long as my

> rooms stay clean, the rest is on their shoulders! I don't live her

alone.

> I'm a slow learner though......took me 12 years to get tired and

mad enough

> to do this! LOL

>

> Good luck setting healthy boundaries, and welcome!

>

>

> Rita

[Guest guest]

,

So, glad you joined us. Debs really said it best so I need not add

anything. Just wanted to say " Hi! " and " Welcome! " to our group.

Know what you mean about finally getting diagnosed. I waited for

three years to get a diagnosis and am greatful. Now I don't feel

like I am going crazy LOL.

I ran a low grade fevers for a year and a half, every day! The only

other symtom at the time was pain and stiffness in my feet that would

last forever. But my docs did a test and my RF (Rheumatoid Factor)

came back negative. I also had many other test some back negative.

The only thing they did find was an elevated SED rate and elevated C

reactive protein. They just didn't want to deal with me and told me

nothing was wrong. I had an insurance company that was not paying

their claims and so doctors did not want to treat patients who had

it. That insurance company is now being sued by every major hospital

and instiution in the area.

The minute I changed doctors and insurance I was refered to a

specialist (RD) and after two visits was diagnosed with RA. Of

course the day I went in my disease had progressed to all of my

joints and there was lots of swelling and heat in my joints. When

the prednisone worked, she determined I had RA.

Sorry I got so long winded, guess I needed to share my story:O)

Hope you have a pain free day.

> Good evening. I was diagnosed with Lupus about 6 weeks ago and

have

> to admit that it was a relief to finally have a name for my

> symptoms. I had been telling the doctors for over 3 years that I

> ached almost all the time, had strange fevers out of the blue, was

so

> tired some days that I couldn't lift my head up off the pillow.

> Finally the doctor scheduled an ANA test and gave me the news.

> Fortunately I retired 2 years ago since I would not be able to keep

a

> job now since my symptoms have become so severe. I took prednisone

> to overcome a rash I had on my body for a couple of weeks and it

> worked but I'm on no medication now. I take Ibuprofen when the

pain

> gets too bad. Are there any other over the counter meds I can

take?

> Also, I have bouts of severe nausea. Do others get this also or is

> that not one of the symptoms of Lupus?

>

> I don't think my husband understands much about the disease and

> doesn't seem to want to learn. He's indulgent to me when I say I

> can't do something but I know that he must be really tired of

hearing

> that I'm aching again. I try to do everything like I used to but

> there are days that I literally can't move and things are beginning

> to go down hill with my house. How do I learn to cope?

>

> B. in MD

[Guest guest]

Welcome ! I'm glad that you found us, but sorry about

your lupus diagnosis. I know what a relief it is to finally

know what is going on. Now that you know that you have

lupus, you can concentrate on treating it. I'm sorry your

husband is not supportive, but hopefully now that you have a

diagnosis and learn about it's affects on your body, he will

understand in time.

We've all had to learn to do what we can on our good day,

and rest when we are flaring. It's not easy especially when

your mind wants to do so much and your body won't

co-operate.

a

[ ] Newbie

Good evening. I was diagnosed with Lupus about 6 weeks

ago and have

to admit that it was a relief to finally have a name for

my

symptoms. I had been telling the doctors for over 3 years

that I

ached almost all the time, had strange fevers out of the

blue, was so

tired some days that I couldn't lift my head up off the

pillow.

Finally the doctor scheduled an ANA test and gave me the

news.

Fortunately I retired 2 years ago since I would not be

able to keep a

job now since my symptoms have become so severe. I took

prednisone

to overcome a rash I had on my body for a couple of weeks

and it

worked but I'm on no medication now. I take Ibuprofen

when the pain

gets too bad. Are there any other over the counter meds I

can take?

Also, I have bouts of severe nausea. Do others get this

also or is

that not one of the symptoms of Lupus?

I don't think my husband understands much about the

disease and

doesn't seem to want to learn. He's indulgent to me when

I say I

can't do something but I know that he must be really tired

of hearing

that I'm aching again. I try to do everything like I used

to but

there are days that I literally can't move and things are

beginning

to go down hill with my house. How do I learn to cope?

B. in MD

[Guest guest]

Chores!

One of my areas of expertise. I have 5 children all of whom have learned

the value of work. I am a list person! I make a list every morning and

since my stupid disease it has gotten harder for the rest of the family but

through grumbles, they do it. I do feel the guilt about not holding up my

end but if I think rationally I did more than my fair share for many years.

It isn't till they are older and on their own that they appreciate what they

have learned and on their own. It shocks my daughters that some of their

friends never had to do anything. In fact my daughter, a, who just read

over my shoulder, said that a friend of heir's older sister who has 3

children doesn't have a clue.

Temple

Kuddle Kritters Farm

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http:www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/KuddleKrittersDairyGoats/index.html

http://www.homestead.com/KuddleKraft/index.html

[Guest guest]

Sorry , I just started spouting off about kids' chores and didn't

welcome you. I am , only diagnosed for almost 3 years, have gone

through many meds and not found the magic bullet like my surgeon likes to

call it. Am currently on enbrel but walk with a walker in the house and a

wheelchair being pushed outside the house. I have had 7 abdominal surgeries

to try to repair an incisional hernia which started with a drunk driver in

January of '94. Another coming up in November-this time a plastic surgeon.

First a knee replacement in September then hip in Spring.

I have learned so much with this group and felt support.

Temple

Kuddle Kritters Farm

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http:www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/KuddleKrittersDairyGoats/index.html

http://www.homestead.com/KuddleKraft/index.html

Re: [ ] Newbie

> Welcome B,

>

> You have joined one of the best support groups on the net. Our moderators

> are knowledgeable, warm, wonderful people. We have all been affected by

> this disease in so many different ways. That if you have any questions,

one

> of us is usually able to answer them or if not, they will find the answer

for

> thru their endless supply of links. You will never learn more about your

> disease process than right here. No one here will ever tell you that it

is

> all in your head or that you are some kind of freak. Because if that

applies

> to one of us, it applies to all of us !!!!! LOL. We are all in different

> stages of this charming disease also......some not been dx'd, some newly

> dx'd, some dx'd so long ago they could write their own books on the

disease.

> Just remember that no two cases are a like & that is what keeps us coming

> back for more.

>

> One the upside, we share jokes, recipes and inspirational messages that

help

> us get thru each and every day. Feel free to share with us anything from

a

> to z, family to physicians, whining is permitted & expected (we serve

cheese

> with the whine every evening at 7:00 pm). You will find that this site

has

> become your new safe place & hopefully you will turn to us often if for

no

> other reason that to just say Hi......

>

> Welcome home, feel free to kick off your shoes & get something cool to

drink,

> someone is always here 24/7. We look forward to getting to know you

better.

>

> Gentle, tender, welcoming angel hugs,

>

> Debs in FL

>

>

[Guest guest]

Thank you for the welcome. I'm sorry to hear

about all your medical problems. There are so many

different things that can go wrong with our bodies

it's scary. I'm having a very difficult time with the

humidity this week. Also, I'm trying to stop a spiral

into depression. I've been on the brink of tears for

the past week. My husband suffers from clinical

depression and went into a bag episode when I was

diagnosed with Lupus and became suicidal. We're in

therapy so that he can overcome his depression and

he's started to respond to his medication...Thank God.

Thanks again for your response to my questions. It's

a comfort to have support.

B. in MD

--- Temple <dat2352@...> wrote:

> Sorry , I just started spouting off about kids'

> chores and didn't

> welcome you. I am , only diagnosed for almost

> 3 years, have gone

> through many meds and not found the magic bullet

> like my surgeon likes to

> call it. Am currently on enbrel but walk with a

> walker in the house and a

> wheelchair being pushed outside the house. I have

> had 7 abdominal surgeries

> to try to repair an incisional hernia which started

> with a drunk driver in

> January of '94. Another coming up in November-this

> time a plastic surgeon.

> First a knee replacement in September then hip in

> Spring.

> I have learned so much with this group and felt

> support.

> Temple

> Kuddle Kritters Farm

> 3 Fox Haven Way

> Chelmsford, MA 01824

>

> dat2352@...

>

> http:www.homestead.com/kuddlekrittersfarm/index.html

>

http://www.homestead.com/KuddleKrittersDairyGoats/index.html

> http://www.homestead.com/KuddleKraft/index.html

> Re: [ ] Newbie

>

>

> > Welcome B,

> >

> > You have joined one of the best support groups on

> the net. Our moderators

> > are knowledgeable, warm, wonderful people. We

> have all been affected by

> > this disease in so many different ways. That if

> you have any questions,

> one

> > of us is usually able to answer them or if not,

> they will find the answer

> for

> > thru their endless supply of links. You will

> never learn more about your

> > disease process than right here. No one here

> will ever tell you that it

> is

> > all in your head or that you are some kind of

> freak. Because if that

> applies

> > to one of us, it applies to all of us !!!!! LOL.

> We are all in different

> > stages of this charming disease also......some not

> been dx'd, some newly

> > dx'd, some dx'd so long ago they could write their

> own books on the

> disease.

> > Just remember that no two cases are a like & that

> is what keeps us coming

> > back for more.

> >

> > One the upside, we share jokes, recipes and

> inspirational messages that

> help

> > us get thru each and every day. Feel free to

> share with us anything from

> a

> > to z, family to physicians, whining is permitted &

> expected (we serve

> cheese

> > with the whine every evening at 7:00 pm). You

> will find that this site

> has

> > become your new safe place & hopefully you will

> turn to us often if for

> no

> > other reason that to just say Hi......

> >

> > Welcome home, feel free to kick off your shoes &

> get something cool to

> drink,

> > someone is always here 24/7. We look forward to

> getting to know you

> better.

> >

> > Gentle, tender, welcoming angel hugs,

> >

> > Debs in FL

> >

> >

[Guest guest]

Thank you a for your input. It feels good to know

that others understand what you're going through.

B. in MD

--- a <paula54@...> wrote:

> Welcome ! I'm glad that you found us, but

> sorry about

> your lupus diagnosis. I know what a relief it is to

> finally

> know what is going on. Now that you know that you

> have

> lupus, you can concentrate on treating it. I'm

> sorry your

> husband is not supportive, but hopefully now that

> you have a

> diagnosis and learn about it's affects on your body,

> he will

> understand in time.

> We've all had to learn to do what we can on our good

> day,

> and rest when we are flaring. It's not easy

> especially when

> your mind wants to do so much and your body won't

> co-operate.

> a

>

> [ ] Newbie

>

>

> Good evening. I was diagnosed with Lupus about 6

> weeks

> ago and have

> to admit that it was a relief to finally have a

> name for

> my

> symptoms. I had been telling the doctors for over

> 3 years

> that I

> ached almost all the time, had strange fevers out

> of the

> blue, was so

> tired some days that I couldn't lift my head up

> off the

> pillow.

> Finally the doctor scheduled an ANA test and gave

> me the

> news.

> Fortunately I retired 2 years ago since I would

> not be

> able to keep a

> job now since my symptoms have become so severe.

> I took

> prednisone

> to overcome a rash I had on my body for a couple

> of weeks

> and it

> worked but I'm on no medication now. I take

> Ibuprofen

> when the pain

> gets too bad. Are there any other over the

> counter meds I

> can take?

> Also, I have bouts of severe nausea. Do others

> get this

> also or is

> that not one of the symptoms of Lupus?

>

> I don't think my husband understands much about

> the

> disease and

> doesn't seem to want to learn. He's indulgent to

> me when

> I say I

> can't do something but I know that he must be

> really tired

> of hearing

> that I'm aching again. I try to do everything

> like I used

> to but

> there are days that I literally can't move and

> things are

> beginning

> to go down hill with my house. How do I learn to

> cope?

>

> B. in MD

>

>

>

>

[Guest guest]

,

Thank you for your welcome. It's great to have

" friends " who understand and don't think you're a

hypochondriac. I run fevers often for no apparent

reason. This humidity this week in land is causing

me a great deal of pain. But things could be a whole

lot worse.

Take care,

B.

--- cwade@... wrote:

> ,

>

> So, glad you joined us. Debs really said it best so

> I need not add

> anything. Just wanted to say " Hi! " and " Welcome! "

> to our group.

> Know what you mean about finally getting diagnosed.

> I waited for

> three years to get a diagnosis and am greatful. Now

> I don't feel

> like I am going crazy LOL.

>

> I ran a low grade fevers for a year and a half,

> every day! The only

> other symtom at the time was pain and stiffness in

> my feet that would

> last forever. But my docs did a test and my RF

> (Rheumatoid Factor)

> came back negative. I also had many other test some

> back negative.

> The only thing they did find was an elevated SED

> rate and elevated C

> reactive protein. They just didn't want to deal

> with me and told me

> nothing was wrong. I had an insurance company that

> was not paying

> their claims and so doctors did not want to treat

> patients who had

> it. That insurance company is now being sued by

> every major hospital

> and instiution in the area.

>

> The minute I changed doctors and insurance I was

> refered to a

> specialist (RD) and after two visits was diagnosed

> with RA. Of

> course the day I went in my disease had progressed

> to all of my

> joints and there was lots of swelling and heat in my

> joints. When

> the prednisone worked, she determined I had RA.

>

> Sorry I got so long winded, guess I needed to share

> my story:O)

>

> Hope you have a pain free day.

>

>

>

>

>

> > Good evening. I was diagnosed with Lupus about 6

> weeks ago and

> have

> > to admit that it was a relief to finally have a

> name for my

> > symptoms. I had been telling the doctors for over

> 3 years that I

> > ached almost all the time, had strange fevers out

> of the blue, was

> so

> > tired some days that I couldn't lift my head up

> off the pillow.

> > Finally the doctor scheduled an ANA test and gave

> me the news.

> > Fortunately I retired 2 years ago since I would

> not be able to keep

> a

> > job now since my symptoms have become so severe.

> I took prednisone

> > to overcome a rash I had on my body for a couple

> of weeks and it

> > worked but I'm on no medication now. I take

> Ibuprofen when the

> pain

> > gets too bad. Are there any other over the

> counter meds I can

> take?

> > Also, I have bouts of severe nausea. Do others

> get this also or is

> > that not one of the symptoms of Lupus?

> >

> > I don't think my husband understands much about

> the disease and

> > doesn't seem to want to learn. He's indulgent to

> me when I say I

> > can't do something but I know that he must be

> really tired of

> hearing

> > that I'm aching again. I try to do everything

> like I used to but

> > there are days that I literally can't move and

> things are beginning

> > to go down hill with my house. How do I learn to

> cope?

> >

> > B. in MD

>

>

__________________________________________________

[Guest guest]

Rita,

Sounds like your list is a big step in the right

direction. I have to learn to ask for help since it's

not in my nature to delegate. My children are grown

and out of the nest and this is a new marriage for me.

He's a wonderful person but as long as things seem to

be taken care of, he doesn't think to volunteer to do

something. But if I ask, he'll pitch in so I really

shouldn't complain.

Take care of yourself,

--- EndlsBreze@... wrote:

> Welcome !

>

> I'm Rita and I've had RA for 12 years now. I felt

> like you just being

> somewhat relieved to have a name for what was

> happening to me and some hope

> that we might be able to get it under control

> knowing at least what we were

> dealing with.

>

> << I try to do everything like I used to but

> there are days that I literally can't move and

> things are beginning

> to go down hill with my house. How do I learn to

> cope? >>

>

> Twelve years later , and I could still have

> written what you just wrote.

> My house is becoming a pig sty and while my family

> knows I have this disease

> and can see my deformities, I still get little help.

> Being a clean person

> who likes having a presentable home, I push too much

> to get it all done and

> of course never do anyway! Yesterday I lost it

> after being put down by my

> husband who was out gallivanting all Sunday (still

> won't say where he was)

> and came home to belittle me for the condition of

> the home and not having any

> dinner. I went to the computer and made up an

> assignment schedule, giving

> the members of my home room assignments and dinner

> schedules. As long as my

> rooms stay clean, the rest is on their shoulders! I

> don't live her alone.

> I'm a slow learner though......took me 12 years to

> get tired and mad enough

> to do this! LOL

>

> Good luck setting healthy boundaries, and welcome!

>

>

> Rita

>

__________________________________________________

[Guest guest]

I hear you !! I praise God that I have two feet and hands that

give me so much pain. Some people don't have hands or feet. Have

lost them (know a lady who lost her hand in an airplane propeller) or

were born without. I bet they would give anything to be feeling the

pain I am feeling now and have the use of those apendages, if even for

a short while longer.

It is good for ME to remind myself of all the things I still have left

that I can be extremely greatful for. It certainly pulls me out of my

self-pity and depression.

No, you are right, we definately don't feel you are a hypocondriac and

we are definately your friends.

I hope you and your hubby are feeling better soon,)

> > > Good evening. I was diagnosed with Lupus about 6

> > weeks ago and

> > have

> > > to admit that it was a relief to finally have a

> > name for my

> > > symptoms. I had been telling the doctors for over

> > 3 years that I

> > > ached almost all the time, had strange fevers out

> > of the blue, was

> > so

> > > tired some days that I couldn't lift my head up

> > off the pillow.

> > > Finally the doctor scheduled an ANA test and gave

> > me the news.

> > > Fortunately I retired 2 years ago since I would

> > not be able to keep

> > a

> > > job now since my symptoms have become so severe.

> > I took prednisone

> > > to overcome a rash I had on my body for a couple

> > of weeks and it

> > > worked but I'm on no medication now. I take

> > Ibuprofen when the

> > pain

> > > gets too bad. Are there any other over the

> > counter meds I can

> > take?

> > > Also, I have bouts of severe nausea. Do others

> > get this also or is

> > > that not one of the symptoms of Lupus?

> > >

> > > I don't think my husband understands much about

> > the disease and

> > > doesn't seem to want to learn. He's indulgent to

> > me when I say I

> > > can't do something but I know that he must be

> > really tired of

> > hearing

> > > that I'm aching again. I try to do everything

> > like I used to but

> > > there are days that I literally can't move and

> > things are beginning

> > > to go down hill with my house. How do I learn to

> > cope?

> > >

> > > B. in MD

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Thanks, .

Have a great day!

--- cwade@... wrote:

> I hear you !! I praise God that I have two

> feet and hands that

> give me so much pain. Some people don't have hands

> or feet. Have

> lost them (know a lady who lost her hand in an

> airplane propeller) or

> were born without. I bet they would give anything

> to be feeling the

> pain I am feeling now and have the use of those

> apendages, if even for

> a short while longer.

>

> It is good for ME to remind myself of all the things

> I still have left

> that I can be extremely greatful for. It certainly

> pulls me out of my

> self-pity and depression.

>

> No, you are right, we definately don't feel you are

> a hypocondriac and

> we are definately your friends.

>

> I hope you and your hubby are feeling better

> soon,)

>

>

>

>

> > > > Good evening. I was diagnosed with Lupus

> about 6

> > > weeks ago and

> > > have

> > > > to admit that it was a relief to finally have

> a

> > > name for my

> > > > symptoms. I had been telling the doctors for

> over

> > > 3 years that I

> > > > ached almost all the time, had strange fevers

> out

> > > of the blue, was

> > > so

> > > > tired some days that I couldn't lift my head

> up

> > > off the pillow.

> > > > Finally the doctor scheduled an ANA test and

> gave

> > > me the news.

> > > > Fortunately I retired 2 years ago since I

> would

> > > not be able to keep

> > > a

> > > > job now since my symptoms have become so

> severe.

> > > I took prednisone

> > > > to overcome a rash I had on my body for a

> couple

> > > of weeks and it

> > > > worked but I'm on no medication now. I take

> > > Ibuprofen when the

> > > pain

> > > > gets too bad. Are there any other over the

> > > counter meds I can

> > > take?

> > > > Also, I have bouts of severe nausea. Do

> others

> > > get this also or is

> > > > that not one of the symptoms of Lupus?

> > > >

> > > > I don't think my husband understands much

> about

> > > the disease and

> > > > doesn't seem to want to learn. He's indulgent

> to

> > > me when I say I

> > > > can't do something but I know that he must be

> > > really tired of

> > > hearing

> > > > that I'm aching again. I try to do everything

> > > like I used to but

> > > > there are days that I literally can't move and

> > > things are beginning

> > > > to go down hill with my house. How do I learn

> to

> > > cope?

> > > >

> > > > B. in MD

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

,

About the humidity, do you have air conditioning? I hardly leave my

air-conditioned house in summer, sometimes we just leave it on for humidity

control.

Depression-yes, I would say most of us know it well. I am medicated-Zoloft

200 mgs but know I would benefit from therapy too but can't face a weekly

trip out with pain.

Temple

Kuddle Kritters Farm

3 Fox Haven Way

Chelmsford, MA 01824

dat2352@...

http:www.homestead.com/kuddlekrittersfarm/index.html

http://www.homestead.com/KuddleKrittersDairyGoats/index.html

http://www.homestead.com/KuddleKraft/index.html

[Guest guest]

hi nancy and welcome, i'm kathy 41 with inflammatory arthritis, mostly in the

back, hips, ankles,neck. i've had carpal tunnel, and now tarsal tunnel. i

also have glaucoma. i am currently taking remicade, my next infusion is the

28th of august, depending on my foot surgery. they also want me back on

prednisone about the week before my iv. they are also going to give me more

benedryl as i broke out in hives last time pretty bad. i also am losing my

faith in this drug as i only noticed results the first time after reading

debs i realized that is how i felt. i don't know where to go from here. again

i have to either be in pain or possibly sick from side effects. some

choices!!!

[Guest guest]

Hi, Kathy. I too have carpal tunnel but it is a whole

lot better than it was last year. I couldn't use my

left hand for anything. I can't take Benadryl due to

being allergic to it. Boy, that's a bummer to find

out. Most doctors don't believe me when I tell them

that but it's true. I have to be very careful about

what meds I take due to multiple allergies and violent

reactions so I'm pretty cautious about drugs. I

understand your remark about being either in pain or

sick from the side effects. Some choices are too

difficult to make when all you want is one day free

from pain. You, and everyone else in the group, are

in my prayers.

in MD

--- kringlemom@... wrote:

> hi nancy and welcome, i'm kathy 41 with inflammatory

> arthritis, mostly in the

> back, hips, ankles,neck. i've had carpal tunnel, and

> now tarsal tunnel. i

> also have glaucoma. i am currently taking remicade,

> my next infusion is the

> 28th of august, depending on my foot surgery. they

> also want me back on

> prednisone about the week before my iv. they are

> also going to give me more

> benedryl as i broke out in hives last time pretty

> bad. i also am losing my

> faith in this drug as i only noticed results the

> first time after reading

> debs i realized that is how i felt. i don't know

> where to go from here. again

> i have to either be in pain or possibly sick from

> side effects. some

> choices!!!

>

__________________________________________________

[Guest guest]

Hi, .

No, I don't have air conditioning. Our house is 110

years old and has only one ceiling fan and that's in

the den. I have to have a floor fan on at night and I

go in and take a shower just before bed and don't

towel off...then I slip into bed, or rather on top of

the bed, and let the moving air cool me off. My

personal thermostat seems to lock on too high and

takes a long time for me to cool off and I can't sleep

if I'm too warm. And of course, there're the fevers

that come and go for no apparent reason to add to the

discomfort. It rained a little bit this afternoon and

the air is a little cooler but I've got to go and fix

dinner so I think we'll eat veggies and cottage

cheese, not ham and scalloped potatoes like my DH

planned on having after his group session.

Take care of yourself.

in MD

--- Temple <dat2352@...> wrote:

> ,

> About the humidity, do you have air conditioning? I

> hardly leave my

> air-conditioned house in summer, sometimes we just

> leave it on for humidity

> control.

> Depression-yes, I would say most of us know it well.

> I am medicated-Zoloft

> 200 mgs but know I would benefit from therapy too

> but can't face a weekly

> trip out with pain.

> Temple

> Kuddle Kritters Farm

> 3 Fox Haven Way

> Chelmsford, MA 01824

>

> dat2352@...

>

> http:www.homestead.com/kuddlekrittersfarm/index.html

>

http://www.homestead.com/KuddleKrittersDairyGoats/index.html

> http://www.homestead.com/KuddleKraft/index.html

>

>

>

__________________________________________________

[Guest guest]

Valarie,

I am part of this group not for myself but for my son. You have come to the

right place. Everyone here will do their best to help you. The list

Moderators a and are amazing. If they can't find it online then it

doesn't exsist. They are wonderful. Everyone here is caring and

understanding. This is also the place to express your worries, so don't worry

about going on and on or venting. We all understand.

hope to get to know you and better.

and age 13 Systmatic JRA

[Guest guest]

hi valerie my heart goes out to your friend jean. sounds like she is

suffering too. i hope the enbrel works for her. i felt better on it, but did

have bad uri's from it. kathy in il

[Guest guest]

Hi there,

I'm not writing for myself, but for a very dear friend. I thought I'd try to

find something to help her with her suffering. My friend, is 61 years old.

She's had RA since her late 30's. Jean's had one elbow replaced, twice; a knee

replacement 14 years ago, and which they have tentatively scheduled for next

month to redo; both wrists are fused; she has rods in her toes, and she's been

in a terrible flare for 9 months now. Her whole body is inflammed and just

eating away at her joints.

She also has Lupus and Sjorgren's Disease, which brings along it's own set of

problems. Nothing the drs have been giving her has been able to help her with

this flare. Her stomach is very sensitive and she can't take a lot of

medications anymore. She takes Celebrex and Meth....sorry, I don't know how to

spell that one She had cortisone shots, again, just before Christmas, and has

been on prednisone, more than she should, over the last few months. It seems to

be the only thing to give her relief.

Last August she was placed in the test trial for Remicade (we're in Canada),

and it almost killed her. She had a very severe reaction to it, which really

upset her because she wanted so badly for something to work.

I'm so sorry for going on so long about this, but I'm desperately trying to find

something, anything, that may help my friend get some relief from her constant

pain. She's at the point where she can do very little anymore. has always

been a VERY strong person and has never let her condition get her down or slow

her down. She's always amazed me at how much she could do, so it's terrible to

see her suffer so. She just saw her specialist yesterday and he's going to fill

in the paper work for her to start using Enbrel (sp). If anyone has anything

that they know could possibly help, please let me know. I really hate to see her

suffer so. Thanks

Take care